When a Child Dies

If you’ve experienced the loss of your child to Trisomy 18, we are so very sorry. Many in our community have been in your shoes, and know the terrible loss you face. The pain of it can be difficult for others to imagine.

Many of our children are lost during pregnancy, either because the child is miscarried or stillborn or the family decides to say goodbye early. Others are lost soon after birth.

In these moments, you will be faced with decisions about how you want to spend these last moments with your child. While nothing can take away the pain of this loss, making memories and having a say in how you spend these precious moments can go a long way to providing you and your family some comfort and peace.

Making Decisions

Deciding whether to spend see and hold your child after he or she dies is an incredibly personal decision for parents. Trust your instincts and do what feels right for you and your family. But many parents are afraid of what to expect and have fears about what their baby will look like. If you are worried, ask your doctor to explain what you can expect about your child’s condition so you feel prepared.

Parents often worry that holding their child after they have died may seem unusual or even morbid. They may worry about judgment from their healthcare providers or feel they must quickly let go of the child, even before they are ready.

If you decide to hold and spend time with your baby, it is so important that you take all of the time you want without worrying about what others may think. The reality is that your doctors and nurses have helped parents through this same experience many, many times, and they know it is not unusual for parents to want to spend as much time with their child as possible, often holding the infant for many precious hours. They will support you and want to ensure that you have every opportunity to make memories with your child and say goodbye when you are ready. Some hospitals may offer the use of a Cuddle Cot, which can allow you more time with your child after he or she has passed.

Creating Memories

Begin making memories as early as you want. Ultrasound pictures become much more meaningful when a child is lost to a Trisomy 18 diagnosis. Anything belonging of your child can also be important and meaningful—even a copy of the karyotype may be treasured. Don’t hesitate to ask your healthcare provider for any memento of your child you wish to keep.

In the hospital, sing to, talk to, rock and love your child without reservation. Bathe and dress your baby if you would like and rub him or her with lotion or baby powder—the scent will be a lifelong reminder of your child—and take pictures with your child. Feel free to bring in special items—a special stuffed animal, an outfit, a blanket, or other meaningful items to include in photos. These items can provide comfort and become meaningful possessions belonging to your child.

Many parents want to take as many pictures as possible and take a variety of photos and videos, including photos with siblings and other family members. Organizations such as Now I Lay Me Down to Sleep provide professional photographers at no cost and can be a wonderful option for families who want professional-quality photos taken.

Hospital mementos can also be very meaningful for parents and may include the crib card, baby beads, ultrasound and/or other photos, a lock of hair, feet and handprints, or a record of weight and length. Any item that the baby came in contact with often means a great deal, such as a hospital-issued blanket or a prop from the picture. These items provide tangible evidence that this baby did exist, and these kinds of mementos have been found to help parents with their healing.

Doing something symbolic in memory of your child—lighting a candle, saying a prayer, or singing a special song can also help you make important memories and can be part of memorials or remembrances in the future.

But you may also decide that holding or seeing your child is not the right decision for you. You may not want photographs. Your decisions about such things are complex and deeply personal, and your healthcare team should always respect your wishes and abide by your decisions. Remember, there are no right or wrong choices. Each family must make the decision that works best for them.

Other Considerations

You may have cultural and religious practices around death and grieving that you would like to engage in during this time. Request the support of a hospital chaplain, a minister, rabbi, priest or other faith leader of your choice, and feel free to engage in the cultural traditions that are meaningful to you.

You may also be asked if you would like an autopsy or genetic testing performed. Ask your doctor to fully explain your options and the procedure so that you can make informed decisions. Again, these are deeply personal decisions, and there are no right or wrong decisions.